Tuesday 28th June 2022

New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Eating With No Teeth*- Head & Neck Cancer. 17/2019.

Eating With No Teeth* – Head & Neck Cancer. 17/2019.

Update on Being a Head & Neck Cancer Patient. 

Oh I “did” have 8 teeth*…in my lower jaw and they remain. Yay for “some” teeth.

In the past year I know how far I have come as far as eating is concerned since my Head and Neck Cancer diagnosis in May 2017. I have been delighted to have an upper prosthesis of teeth now screwed into my abutments in my jaw. They were attached on 21 August 2018.

The Before and After of “Teeth Day” 21 Aug

OH HAPPY day….it really was but I had many eating lessons to come and I still do. More on that in a future post.

Day 1 post surgery to around Day 8.

Back to those months when I was post-first surgery. I recall being fearful of what it would be like not to eat but with a fluid drip and then a gradually introduced naso-gastric feeding tube my body was cared for. My mind did accept what it was until around Day 7 post-surgery when I recall feeling hangry. You know: angry because of hunger. So, when I was given the chance to see if my mouth (and brain!) remembered how to sip water and my throat allowed it to swallow…remember all of the inside of my mouth had been affected in some or many ways but my reconstructive surgery…it was heaven!

This:

Day 9 and Day 10. Discharge on Day 10.

This:

First meal in hospital. Then next 3 times I did not enjoy it much.

Early days at home. First Weeks.

I have IBS and with an empty gut receiving food for the first time in a long time, as well as the prescription of a far too strong for me anti-biotic on the morning I left hospital as a “your drain in your leg looks infected” ….my gut (and I) were just not happy in that first 10 days home even though I was starving. Poor husband did his best to please, and I also tried to be helpful but it really was a challenging time.

When my GP unravelled the cause of the massive diarrhoea episodes I had, he told me to forget any (hospital dietitian suggestions of ) liquid meal replacements, protein additives and eat what I could and felt like. The relief was amazing and coming off the giant dose of anti-biotics helped as the leg looked fine. The toast in these pics really wasn’t consumed but I liked ‘tasting what was on it. Avocado and soup were good friends, and also peanut butter eaten off the spoon. Jelly and icecream have never been a favourite but they provided so much mouth comfort with their smooth coolness.

The next weeks turned into months.

By the time the second week at home was over, despite my sore leg, I was able to do some meal prep. It frustrated me that I depended on my husband’s kindness and labour as I wanted to contribute. Eventually I worked out how I could have some say and also make some meals that would work for me. We mostly ate separate meals anyway because of his health. I also had many types of soup: homemade vegetable soup, pumpkin soup & tomato soup. For someone who was never a cereal girl at breakfast, weetbix and milk were/are my go-to foods!

Why this post about eating as a Head and Neck cancer patient?

I have written about my management of eating in two posts.

Part one is here, part two here.

Why I decided to do this more detailed one is for any  newly-diagnosed head and neck cancer patients who come here to read and view. Sometimes it is the head and neck cancer patient’s carer who needs some ideas. It can be very overwhelming and confronting when something as normal as eating & drinking (let alone speaking and swallowing) is changed dramatically via a cancer diagnosis.

I was fortunate in many ways. I had a limited time with only a naso-gastric tube before returning to eating and drinking as well as I could.

I know some people have long-term eating and drinking challenges following different Head and Neck cancers and procedures.

My health is good. I am looking to the 2 years marking the first cancer surgery in July 2017. What I know is that I may have to modify my eating again over time if more surgery is prescribed inside my mouth to enlarge the space between the lip and ‘teeth’ on upper prosthesis.

How To Seek More Information On-Line.

In my case, the words and written information from my Chris O’Brien Lifehouse dietitian helped me. I learned about the important of protein and fat in a post surgery diet. I also learned to value-add and I am grateful for that. For information on Chris O’Brien Lifehouse, go here.

Each head and neck cancer patient needs to be guided by their professional team.

The site and organisation called Beyond Five has a comprehensive page of information and this takes you to pages on nutrition with links here.

Beyond Five is the organisation I am working for as an Ambassador in 2019 to raise awareness of Head & Neck Cancer.

The stories of others with Head & Neck cancers are shared for here all to read:

 

This is a link to finding avenues of supportive care on the Beyond Five website.

There are support groups to help you as well. Here is the link, again from Beyond Five, to those in Australia and New Zealand. Correct at the time of posting.

Recently it was World Cancer Day and I submitted my story which was published here.

I AM a head & neck cancer patient

I WILL share for others to be aware

 

This post is going live on the morning I will be driving 2 hours to Chris O’Brien Lifehouse, donating some craft supplies to their Arterie program, having the first meeting with Beyond Five for 2019 and then visiting my Head & Neck surgeon, Professor Jonathan Clark and Clinical Nurse Consultant & Surgical Assistant Sr Cate Froggatt. After my cancer check, I will be better informed about ‘what’s next’ and then drive myself back home!

  • UPDATE: the meeting went well and provided much for me to discover as I move into my role as Ambassador to Beyond Five, and then my cancer check went well too. My professional team told me the inside of my mouth looked better when they last saw me early January and no surgery is required (I always add, at this stage…as my journey has had some detours!) and I will be back for a 3 month cancer check in mid May. That will be 2 years since diagnosis!

Wishing you well, from me. a head and neck cancer patient, to patients, carers, family and friends.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love link up on Wednesday

On Thursday linking up with Leanne for Lovin’ Life here.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

But It IS Still About Cancer. 2018.103.

But It IS Still About Cancer. 2018.103.

Since spending much of last Tuesday, 2nd October, at Chris O’Brien Lifehouse (my cancer hospital) in Sydney, I have been affected by the fact that the reason I am in need of regular visits is because I have cancer. Specifically a Head and Neck cancer that was removed from my maxilla and upper lip named:

“Hybrid squamous cell carcinoma showing features of both verrucous squamous cell carcinoma & conventional squamous cell carcinoma”

On Tuesday I got a copy of the Histopathology report from 6 July 2017 surgery. It was ‘less confronting’ to read from this distance of time but it did have words in it I found hard to read.

With no risks per se, other than age, it seems my cancer took hold. I reckon it was there for many months before it was discovered after having my bridge/teeth removed when the gums were so sore and growing over the teeth (my request to do so in January 2017 was not heeded until April 2017). Diagnosis came in mid May 2017.

Why am I writing this now?

Because after all the surgeries (4 in less than one year), and many, many visits back to Westmead for my prosthodontist to make my mouth ready to accept the upper prosthesis of teeth, I thought I was almost done.

I am not.

Cancer is and will always ‘be there’ and in fact, my Professor and lovely Cate, reminded me “It IS about cancer” and that is why I come back for check ups and need to be vigilant myself about any changes.

My day of catching up, meeting people and doing my trip to Sydney independently was wonderful and I am so grateful that all of these people care about me and helping others with cancer. But it came home, forcefully, and is affecting me today with some sadness;

Cancer is always there. I had let it hide for a while behind everything else I was doing. I appreciate you reading this far! It is important, always, once I have something impact me as this has, that I share.

My husband is a wonderful person I can chat with always and I saw my GP to update him as a de-brief.

But before I go on, I had a TREMENDOUS day on Tuesday, noteworthy too because it was the first time I had driven myself to Chris O’Brien Lifehouse.

Asking Others For Their Thoughts.

I asked around  facebook friends who I know are through the active stage of treatments for their thoughts and some kindly replied with these words.

From S.:

“I’m past the ‘active’ part of my treatment, I’ve had surgery and radiation. Now I take a once a day tablet to prevent recurrence and I got 12 months all clear. But some days I feel just awful with fatigue and other side effects. I spend whole afternoons sleeping on the couch. I don’t feel like myself and it’s really hard when people say ‘oh you must be back to normal now’. I’m not back to normal and I don’t know if I ever will be. The weight of expectation (my own and others) feels so heavy and overwhelming sometimes. Depression, anxiety and feeling down even though you survived cancer feels inevitable and like I am lacking gratitude for my recovery. I’m not, it’s just hard”

From V.:

For me post cancer treatment is a mixed bag. I’m so grateful for my recovery but the fear and uncertainty for the future is still there. It’s a monkey on your back forever and you have to find a way to live with that monkey. The monkey is very loud and cheeky at times. Other times I give my monkey a time out and she sulks in the corner. At my recent follow up appointment I sat in a waiting room full of women ( I had early stage breast cancer).   They all had that haunted ‘how in the hell did I end up here’ look on their face and you just bravely smile at each other without any need for words.

From S.:

It’s my cancerversary on Tuesday so I’ll be blogging about it too! I don’t think the cancer shadow ever goes away but I try not to let the worry of it steal my joy of today.

From M:

 The elation of hearing the words “all clear” faded more quickly than I imagined and in its place was anxiety. Having been so closely under the microscope for so long,  I felt anxious that the cancer might return and it wouldn’t be spotted. Over time, this does ease and I look forward to my six-monthly check ups for continued reassurance that all is ok.

From M in N.Z.:

It’s normal to have a slump in mood after treatment ends. I availed myself of the Cancer Society psychologists who are trained to help us deal with the transition from treatment to the new normal.

I also went to the NSW Cancer Council website and found this article about ‘after the cancer treatment stage’.

Can cancer be a positive experience?

  • Many people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience.
  • Cancer may cause you to re-examine your life choices, and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual, as even positive change can take getting used to.
  • After treatment, some people want to help improve the cancer experience for others through advocacy or volunteer work.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#sUFxCMjbDj1ZGQz4.99

New friend to me, and known to many is journalist and M.C.  Julie McCrossin, who is now 5 years down the track from her Head and Neck cancer diagnosis and she sent me here, to her podcasts for the Cancer Council, and this one of fear I listened to again.

Liverpool Hospital Head and Neck Patient Support Group listening to Dr Ben Smith, Ingham Institute on cancer recurrence anxiety. Learn more about managing anxiety. Listen to The Thing About Cancer Managing Fear podcast cancercouncil.com.au/podcasts/episo… @beyondfiveorg @CCNewSouthWales http://feeds.soundcloud.com/users/soundcloud:users:314217701/sounds.rss

Julie said “I find the fear catches me unawares, like on my recent birthday”

Thank you friends for sharing.

So, I am not unique.

Always good to know.

And I can share my worries and fears with others who ‘get it’.

Having cancer never really ends, but I am always grateful for the friendships and new experiences I am having as a result of cancer.

Thank you one and all.

Denyse.

Joining with Kylie for I Blog on Tuesdays here and with Sue and Leanne here on Wednesdays.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest